Aristotle: the man who cornered the market of classification. Aristotle’s History of Animals classified organisms in relation to a hierarchical “Ladder of Life,” placing them according to complexity of structure and function so that higher organisms showed greater vitality and ability to move. This last month I haven’t felt much like a higher organism since I’m not feeling especially vital and my ability to move has been compromised. But I’m hanging on to my designation as a higher organism, dammit! This, too, shall pass and, besides, I can’t imagine Aristotle liking a quitter (he tutored Alexander the Great fer crissakes).

In all of the different points of views of breast cancer–stages, treatment, survivorship, or chronic end game–all exist in a weird disease hierarchy. Have you noticed?

When I was first diagnosed there was that odd feeling of joining a club. This was a fleeting thought, but it was a thought just the same: I’m pink now. Kind of in the mainstream and all. I can Walk for the Cure and be one of the survivors. That moment diluted quickly and I was kind of surprised that I even thought it. The surgeon told me that he thought treatment would be straightforward: hormonal therapy, lumpectomy, radiation. Greater than 80% of full recovery. If I didn’t do anything it could kill me, I was told, although I am being honest when I tell you that I didn’t give any thought as to how breast cancer kills you. And can I say that in a past life I was a nurse? How blinded I had become with the pink messaging. Cure! Survivor! Woot!

But still I did the research and endeavored to learn as much as I could. I was Stage II, Grade 3, ER+/PR+, HER2-. I was gonna be fine! It will be cured! Yay! To be honest, no one–absolutely no one–talked about metastasis as a possibility in either the short or long term. It was all about treatment and cure. A year from now this will be all behind me. I didn’t have metastatic breast cancer. You know, I had the good cancer.

Even when my oncologist wanted to do the PET/CT to stage the disease I didn’t worry. She wasn’t worried–or so she said. For her this was a routine part of her diagnostic toolkit. Both the surgeon and the oncologist were surprised. When I learned that I was Stage IV I was thrown for a loop. Good thing I read about it. The surgeon basically told me I was Stage IV, said he hated to be the one to tell me, and we said goodbye. (Not for nothing, but I’m sorry I had to be the one you told, asshat.)

And that’s when I became cognizant of the hierarchy of breast cancer. I became very aware that the fundraising discourse was largely about survivorship. A kind of sisterhood of baldness, chemo, cording, lymphedema, et. al. It was presented as a kind of party. Lots of ribbons and pink stuff. You had to go through hell, but you would go through it and come out the other side. You got to play with the cool kids.

And then there were the mets people. I felt like the New York Mets: a viable professional sports team that no one respects. I really had to look hard beyond the rather short paragraphs about 2-3 year survival rates and no cure. Hm, nobody was throwing a party there. No fundraising either. I felt “less than.” Tarnished. Not worthy. Guess I’m not allowed to play with the cool kids anymore.

And if it wasn’t already enough to feel crummy from, you know, learning that cancer would eventually kill me, I kind of felt like it was my fault. I was fat and producing a lot of estrogen, so it must have been my own fault. I didn’t eat well, exercise enough. I couldn’t even blame it on a gene. It must be all my fault. If you read the literature it was all about prevention and early detection. I couldn’t lay claim to either. I deserved it.

Thank goodness I decided to blog. It was through this network that I slowly became aware of the real landscape. Metavivor and Metastatic Breast Cancer Network were becoming my lifelines. Finding other women who were going through this also helped. Wow, some of them were fit, healthy, thin and they still had metastatic breast cancer. Some people didn’t find it early either. Maybe I wasn’t a schlub after all.

In the short time that I have been driving this Corvair (link provided for you young uns) I have learned that the conversation is changing. And, quite honestly, if I was going to steer into this mess, might as well steer into it now. Folks are questioning pink, Stage IV breast cancer is no longer the Debbie Downer of the dinner party, and there are a lot of resources from which one can learn a lot about the disease; the most important of which is knowing that it isn’t necessarily a short term death sentence. And while I am never happy that someone else has come into the fold, I am glad that people are now talking about it. And the first steps in any journey are the most important. Like Winston Churchill said, “If you’re going through hell, keep going.” And, I might add, bitch loudly the entire way.

15 Responses to The Mets

What an incredible post. I love your honesty about your pathology and fitting in to the “I am going to be cured.” club, yet finding your breast cancer took another path. You approach Mets with the same honesty and help me still feel included in the same breast cancer club even though I had a recurrence that was not Mets. You validated the fact that I really have your back and we are in this together to do what we can to make a difference, especially for MBC. While the NBCC works on a vaccine for 2020, we still must change the conversation for the MBC community and make sure there is so much more research about MBC. If I have to listen to one more study about the difference between tamoxifen and an AI, I am going to go crazy. They are wasting important money that needs to go to MBC research. I am also realistic about the 30% of us that can recur with Mets. having any pathology. I think it is vital that we talk about MBC whenever we discuss breast cancer, Together we have got to make the public aware of the truth about this disease. Thank you for this great post.

Amen, sister! We absolutely must talk about MBC. I mean, it’s breast cancer–it’s not some affiliated disease. It’s the pink ribbon on steroids. I think about the ACT UP! movement. If these folks did not take a militant stand we’d still have people dying from AIDS in droves, the FDA sitting on experimental drugs, and spending millions on repetitive and overlapping research. This whole pink “good girl” movement is bullshit. Where are 1,000,000 women marching on Washington to demand that legislators prioritize it? Oh yeah, I forgot, government is bad and we’re gonna have to leave this research to the private sector. Grrrrrrrrrrrrrrrrrr!

Another thing: I’m 52. When I got a diagnosis of Stage IV there was an odd level of middle aged resignation. But women in their 20s, 30s, 40s, get diagnosed. There is no “resignation” at that age. Cripes! It’s not a dirty little secret. It can’t be. We have to talk about it to, at the very least, support these young women and fight for their right to live a longer life.

One of the first thing a friend (BC survivor) said to me upon learning of my diagnosis was that everybody’s cancer is different. Keeping this in mind has helped keep my equilibrium when dealing with various people. Afterall, it’s not a competition.

One thing I try to do is to be open about my cancer. Sometimes it gets too personal, or I lack patience & energy for the conversation, but I try. The other thing I try to do is to avoid the survivorship lingo. Screw that. I’m only important because I survived? Will I have failed somehow if I don’t? Nuts to that! Whatever cancer folks have, BC or other, we’re in this together.

Great post. I always feel weird liking your essays, because I’m worried it’ll be misconstrued as liking breast cancer. I’m glad you’ve found the resources to approach your diagnosis with positivity and determination. Some gaudy pink party is overrated, anyway.

Thanks so much for your post! I’ve been living with mets for about five years now and fe like I just had my first experience with what you’re describing when someone told me it was wrong to share my story with a newly diagnosed person because it would scare her. I responded that I refuse to be invisible. I will not lie about my situation and I will continue to spread awareness that we’re here and need funding to save lives.

Scare her. Yeah, like teaching women about conception and birth control would scare them. Or giving them the responsibility of the vote would scare them. Cry me a river.

The more knowledge you have the more power you have. Explain what that 20% of 80% survival means: it could come back in the breast or it could metastasize. I know that i heard 90% and 80% and didn’t even think past to that 10% or 20%. Plus, the more awareness folks have of BC metastasis, the more they will know for what signs to look and not ignore potentially significant symptoms.

Scare her my ass. Not having a cure scares us. What about our feelings?

Another fabulous post. These words really say a lot, “And that’s when I became cognizant of the hierarchy of breast cancer. ” Such a bizarre concept, but it’s true; I agree with you. There is one. I’m glad people are finally talking more about mbc too, and you are an important cog in keeping this conversation going. Thank you.